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In this time of unprecedented pressure with the pandemic of the covid-19 illness devastating the world, it’s worth taking stock on the challenges so far in the voluntary and community sector, and frankly speaking, who are failing to meet them. This is important, I suggest, because after these awful times have passed we will long remember who performed well and who fell short.

Commissioners

Let’s start with the commissioners. No names, but we see commissioners issue deadlines for applications and having many NGOs staff putting in extra hours at this time – the most difficult of times possible – only to be told with just hours before the deadline, sorry but we’ve cancelled the call and sorry for any inconvenience caused. “Inconvenience,” FFS?! Either cancel it in good time or let the process run to completion and at least get some money out to NGOs at the time when many are struggling to make the next payroll. But getting NGOs to do almost all the bidding work at a time of maximum stress for absolutely zero benefit anywhere – shows remarkably both a callous cruelty and a low level of institutional intelligence.

When this is all over, it will be useful to discuss the questions around the new commissioning culture and competence.

Remote working, multiple channels and micro-management

Speaking today to staff in NGOs in Bristol and Manchester, there seems to be a new theme in WFH (working for home) and potential communications and work overload. With the legitimate concern about some staff feeling isolated and alone, we might have forgotten that over-communication is also possible and dangerous too. Colleagues have described how they are receiving messages down multiple channels – here are eight common ones: emails, phone calls, WhatsApp messages, Zoom conferences, texts, Facebook feeds, Slack channels, Twitter storms and the like.

NGO managers have a key role here, not least to remember that every two-minute email by them may make two-hours of work for the person at the other end. Working in the same office, the manager might see the expressions and even sense some push-back by their staff: remotely they just keep pumping it out. These is CCTV film from the NASA control room during the Apollo 13 “we have a problem Houston” crisis where the mission controller just says to everyone there, “can we have less chatter in the room please?” Indeed.

Some good funders

And in other news, word has reached me of a funder who has said they might consider approaches outside the usual cycle of applications for worthwhile projects struggling to meet deadlines with all the chaos and stresses at the moment. I suggest they will be remembered with a high regard when some of the other players have lost whatever good name they once had.

The UK government is now being criticised by some respected public health experts for a lack of transparency and urgency, especially around home nursing.

One such critic is Professor John Ashton from the north west of England, who my late wife Lorraine Gradwell knew and respected from her time working at Health Manchester 2000.

In short, the criticism is of a lack of transparency about the NHS and it limitations to cope with an epidemic. Because of austerity there have been massive cuts in the number of hospital wards and beds, and this includes intensive care units, ICUs. Hospital beds and ICUs are already at full capacity because of so-called winter pressures. We knew that staff shortages were already an issue from the debates in the General Election last year. The controversies about the alleged 40 new hospitals and 50,000 new nurses, or not.

We now know that between 70% and 90% of people will get a covid-19 infection. After this, there is so-called herd immunity. There will be no vaccine ready during this period.

For most people, their infection will be mild. Some younger, healthy people may not even know they have had the infection and have been contagious.

But for elderly people and for many chronically sick and disabled people with compromised health the infection will be severe and many will die. Somewhere between 1% and 3.4% of the population will die as a result.

Even at the lower end of the estimate, there are nowhere near enough ICU beds in hospitals. And brutally speaking, the chances are that hospital ICU beds will be reserved for “special cases” such as younger people only, and even then might be stretched to the limit.

So, if the UK government was being transparent, they would say now that for the vast bulk of people who will be severely infected, it will be what is called “home nursing”.

In the absence of proper, transparent advice, we have to try and plan for what that might mean for disabled people who already use personal assistants (PAs) for what some health professionals might consider as a form of basic nursing.

So let us make a guess: home nursing in the community will, like the hospitals, being very over-streched. So if they find someone with PA support they will expect PAs (along with any family members living in the same home) to provide the bulk of nursing.

Frankly, I think and fear that this will be mostly oxygen (tanks delivered to the house, by the bed with a nose cannula) and pain relief. Experienced nurses will probably be given authority to prescribe and carry morphine, at least for a year.

I wish I could be more optimistic here, but in the absence of transparency I don’t see what more can be done by the NHS.

When you go around a museum and see the field hospitals used in World Wars One and Two, with volunteer nurses, army orderlies (who could change dressings), and stretchers laid out in lines – I suspect we will be working at that level again, but hidden away in hundreds of thousands of homes rather than in tents in the park.

The last major pandemic, the so-called Spanish flu in 1918, killed 50 million people worldwide, including three friends of my grandmother who was 15 years old at the time. Her words are below.

Minnie Duffy (1903-1999) was my mother’s mother, born in Accrington, the fifth of six children. She was a cotton weaver in the mills, working four looms, and had three children. This is an extract from our family history book:

“One Friday evening in 1918 Minnie was playing the piano and three of her friends were singing along with her. By Sunday she was the only one still alive.
‘That was the flu,’ Minnie said [to our mother in her final years]. ‘You could see someone walking towards you normally, start to stagger then fall down. By the time you reached him he were dead. It was so fast.’
The girls took longer to die, she told me, because their father kept them sitting up in bed. Flat, their lungs filled with fluid and they drowned very quickly. But even sitting up, they still died. (page 16)”

We know that covid19 will be fatal to many elderly people, and for the official new phrase for chronically sick and disabled people – “the vulnerable.”

The details will change over time, but the current projection is that 1 in 7 elderly persons ages over 80 years will not survive this virus.

A projected impact on “the vulnerable” isn’t known yet, but it surely won’t be good. For example, people with cystic fibrosis are already taking every precaution possible.

So, to get the ball rolling here is a suggestion:

*It would be helpful if DPOs could agree a general new standard procedure, and this is a suggestion for sharing, especially to less well resourced DPOs.*

1. Almost all meetings and events will be virtual until further notice.

2. We acknowledge that IT isn’t as accessible to many disabled people compared with a face-to-face meeting.

3. The better-resourced DPOs will assist the whole movement by developing standard IT solutions that are as accessible as possible, and will share these solutions as widely and generously as possible.

4. DPOs will be especially concerned that any disabled people who are currently excluded from existing IT solutions are supported, and that their lived experiences are used to inform changes to pre-existing IT partial-solutions where possible.

6. Finally, DPOs will aim for a common IT approach so that the interaction *between* DPOs and new networks of disabled people are as seamless as possible.

Only half-jokingly, it is almost the eleventh commandment for many younger disabled people that: And Truly I Say Unto Ye, Thou Shalt Trend On Twitter.

But we already know from some discussions within DPOs that Facebook, for example, is not accessible to some disabled people, and the solidarity of the movement would be broken if we just accept what some people find easy to use without listening to the lived experiences of others. This is where the better resourced DPOs can create and share their knowledge with the rest of the movement.

Let’s not forget why this is important.

Going back to the virus, the national policy aim is the delay the peak, but frankly that is to help with the limited capacities of the NHS. Sadly, delaying the peak won’t (currently) reduce the final total of deaths, but it will help health services cope.

And imagine if it will also be that 1 in 7 disabled people don’t survive this virus, or even 1 in 20.

Here are a few more summary comments on what might be interesting snippets of research.

1. The anniversary this year of the Alf Morris achievement in creating the Chronically Sick and Disabled Persons Act 1970 got me reading an interesting book by him and Arthur Butler, who was a friend, political journalist and PR adviser.

I would recommend a close reading of this book to people who are interested in research in British politics and disabled people. At times the language will jar with the modern reader. But work through that, because it tells a story of the political construction by a back-bench MP of an understanding of disability policy for the first time in Whitehall. Until then 11 different departments had taken an uncoordinated and impairment-led fragmented approach, and had resisted every attempt to change. Having unified Whitehall, the centre of resistance moved to local government, and the early years after the Act was law are described by the press campaigns to shame various councils to do their (new) duty. And the resistance was as much from within the Labour party as it was from the Conservatives.

Something that rather jumped off the page was when Alf Morris says in the Prologue:

“I explained that I wanted to remove the severe and gratuitous social handicaps inflicted on disabled people” (Morris and Butler 1972 p10)

Clearly this isn’t the full-throated social model of disability as per UPIAS and Mike Oliver, and in the context of the extract above it does use the built environment as its main example, but even so, credit where it is due … “social handicaps” is an idea in political discussions and print by 1972.

For me, the biggest weakness of the CSDP Act was in the establishment of new, segregated YDUs – Young Disabled Units – which were new institutions built within NHS hospital grounds.

For more on YDUs and the 1970s onwards campaign to close segregated provision, my recent publications on Grove Road (Maggie and Ken Davis) and on UPIAS (Paul Hunt) give a lot of detail and discussion. This all ties into Independent Living today, another neglected area of political research I feel.

2. The Phil Mason Collection has been topped up within the GMCDP Archive, with some closed materials (GDPR etc) and some open materials (policy reports etc) giving a good insight into the national and local government dynamics in the 1980s around disabled people creating their own independent living projects and practices. Some materials also show work at the European level with DPI (Disabled People’s International) and then ENIL (European Network for Independent Living).

There are also a lot of now-poignant papers around the establishment and criteria of the ILF (Independent Living Fund), now abolished, a calculated act of political cruelty, spite and vandalism in my opinion.

3. A good friend and colleague from my time working at GMCVS in the 1980s, David Sutcliffe, has kindly shared in his retirement from his bottom drawer, copies of two guides I had worked on in 1987. Clearly he was a better Information Officer than I was! One guide was on the media, and will make for nostalgic reading for people of a certain age.

The second guide was on venues, which I co-wrote with Lorraine Gradwell in the early years of our relationship, and was a co-production between GMCVS and GMCDP. The idea was to show voluntary and community groups which buildings in their area were accessible to disabled people and therefore suitable for meetings and events. Bits of it will make the modern reader cringe, but like the TV programme Life on Mars, that is how it was back in the day. I’m organising a small reprint of both guides for various archives and similar, and pdf copies which can also be used for larger print.

4. Finally, the replica banner of Justice Not Charity is under construction with all the parts now ready. The original was used by the National League of the Blind 100 years ago on 5 April in the march from Manchester, Leeds, and Newport to London, and a photograph survives.

At the risk of being a bit presumptive, I thought it might be best if I started writing a general message periodically on current research projects, rather than sending out lots of separate emails. Feedback welcomed.

So, here goes…

1. 1960s. For the 50th anniversary events about Alf Morris’ Chronically Sick and Disabled Persons Act 1970 I have been researching the campaigns by disabled people in the 1960s which informed these new legal rights. A 12-page draft research paper is currently being circulated to interested individuals, please say if you’d like a copy of this *draft*.

2. 1980s. Following an interesting conversation with Dorothy Whitaker last year about the Metrolink access campaign in the 1980s and a key lobby meeting in November 1984, A 14-page draft research paper is being circulated to interested individuals who were mostly there at the time, ditto as above. I’m thinking next about the Disability Design Reference Group run by Breakthrough UK for Transport for Greater Manchester, set up in 2008 in part to engage better and earlier with disabled people’s transport concerns, and whether this new research needs to dovetail with any DDRG agenda. Drawing in part on papers in the Kevin Hyett Collection. Feedback welcomed, as ever.

3. 1990s. I’ve been working on a timeline for DAN events and people, DAN being the disabled people’s Direct Action Network. Many thanks to Gill Crawshaw, Leeds, for her loan of her extensive collection of DAN papers and photos, a full copy of which is now in the GMCDP Archive. Similarly thanks to John Smith, Notts. Alan Holdsworth is in the UK soon so a weekend catch-up is planned with a former DAN member hosting (invitation only) to add to the DAN Collection.

4. 1970s. Maggie Davis’ book called “To and From Grove Road” is now launched with details of her and Ken’s campaign for and achievement of independent living before direct payments. Her Collection of papers is now in the GMCDP Archive. Free pdf online.

5. 1970s. Working with Judy Hunt on maybe publishing some further writings by Paul Hunt, plus looking at republishing Stigma, a book by 12 disabled people which he edited in 1966. Some details still confidential.

6. 1970s. With Maggie Davis directing, looking to publish a book of Ken Davis’ poetry. A draft version was made for their family for Christmas.

7. 1980s. The Philip Mason Collection within the GMCDP Archive will be added to soon with a new file of 93 letters by Philip about Independent Living, and especially around the campaigns for the Independent Living Fund, established in 1988. (Sadly, now abolished.) This is a closed file because some aspects are personal, genuine research by disabled people would be allowed with ethical restrictions. Thanks to John Evans for facilitating.

8. 1960s-to date. With some good friends we have been preparing a timeline of radical mental health organisations in and around Manchester from the 1960s, including cataloguing some existing archives and hopefully building some new ones. Working group meets monthly, by invitation.

9. Plus some confidential ‘irons in the fire’ which will be reported by myself or various DPOs if and when appropriate, including some possible TV and film items.

The data showing the spread of covid-19 is changing day by day. The current advice centres on people going into self-isolation as a precaution and as a method of containment. The reason is that covid-19 is at its most dangerous in a hospital or a health centre. Current knowledge (caution: this is not a medical website) is that the virus has a mild impact on most people, but for some babies and some adults it can be fatal.

These so-called vulnerable groups, according to current reports, include newborn babies and adults with compromised health. This list of compromised health includes people with:
– cancer,
– serious pre-existing conditions,
– COPD, and
– breathing difficulties.

This list naturally includes many disabled people. It also naturally includes many hospital patients and many health centre visitors, as well as being a high and sometimes fatal risk to health care workers. Hence the focus on self-isolation and telephone consultations with health care services.

However, for disabled people, self-isolation might become the best precaution – to protect themselves from the general population rather than to protect the general population from them.

But what then about PAs? How as a disabled person can you self-isolate if you need PAs to visit you daily? And will PAs become the most vulnerable to infection, similarly to hospital-based health care workers, because of the nature of their work?

Given the intimate and sustained nature of many PA tasks, the idea of gloves and masks seems inadequate to me as a barrier to cross- infection, but are we prepared logistically and culturally for PAs to visit disabled people, and other people with compromised health conditions, in full haz-mat suits – it might feel too extreme for home-based care, but it might save lives.

Alternatively, it might be the PA rota that has to be abandoned. The PA and the disabled person may have to self-isolate together, but this assumes a lot about the PAs own life circumstances as well as about the availability of PAs for 1-to-1 support rather than a rota of visits.

Perhaps as a start, for self-isolating disabled people, the maximum amount of assistive equipment (self-operated hoists, etc) should be deployed out of official storage and into homes as a matter of urgency.